Download the sexual wellbeing and breast cancer in Australia

Sexual Wellbeing and
Breast Cancer in Australia:
Experiences of people with breast
cancer and health professionals
Executive summary May 2011
Prepared for Breast Cancer Network Australia (BCNA) by
Professor Jane M. Ussher
Associate Professor Janette Perz
Dr Emilee Gilbert
University of Western Sydney
May 2011
Acknowledgments
We wish to thank all the women who participated in this survey, especially your candour and
honesty in sharing your experiences with what is a deeply personal issue. In participating in this
project you have helped to bring this important issue to light, and contributed to improving
outcomes for many women.
We also wish to thank all the health professionals who participated. We appreciate your willingness
to sharing your strategies and reflections on supporting women.
Suggested citation
Ussher, J.M., Perz, J., & Gilbert, E. (2011). Sexual wellbeing and breast cancer in Australia: Experiences of
people with breast cancer and health professionals. School of Psychology, University of Western Sydney,
Sydney, Australia and Breast Cancer Network Australia (BCNA), Melbourne, Australia.
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May 2011
Introduction
A diagnosis and treatment for breast cancer can have a significant negative impact on women‟s
sexual wellbeing. This is an issue that is too often ignored, and many women feel isolated and
alone as a result.
In 2009, BCNA surveyed around 200 women with breast cancer about sexual wellbeing, and found
a significant unmet need for information and support with this issue. As a result we added a new
section on sexual wellbeing issues in the second edition of the My Journey Kit, and produced an
edition of The Beacon specifically on this topic.
As BCNA wanted to better understand the extent of the issues experienced by women, and for the
health professionals who support them, in late 2010 we commissioned Professor Jane Ussher and
her team from the University of Western Sydney (UWS), to conduct research in this area, on our
behalf.
The purpose was to better understand the issues for individuals with breast cancer and health
professionals, and to identify practical solutions for women to help manage sexual wellbeing issues.
This executive summary report outlines the results of this research. Part One details the results of
a survey completed by 2210 people with breast cancer, which was supplemented by interview and
focus group accounts with a further 6 women with breast cancer.
Part two focuses on the results of a separate survey completed by 159 health professionals,
supplemented by interview accounts from a further 11 health professionals. The majority of health
professionals (84.4%) who completed the survey were primary health care professionals with
breast care nurses comprising the largest proportion (62.5%). Health professionals working in
allied health comprised 15.5% of the total number of health professional participants.
Please note that the tables and figures outlined throughout this summary, provide the percentage
and count for each response. Percentages may not total 100, as participants could choose more
than one response and/or not all participants provided a response.
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May 2011
Part One: Experiences of people with breast cancer
General profile of participants
The survey was attempted by 2210 participants, with 1965 responding to all questions
representing an 88.9% completion rate. The average age for participants was 54 years ranging
from 18 through to 84 years; participants were predominately female (99.8%), self-identified as
Anglo-Australian (89.1%), had further tertiary education and/or training (60.7%), and represented
all Australian States and Territories, with 45.6% from regional, rural and remote geographical
zones. The general profile of participants is outlined in more detail, in table 1 below.
Characteristic
Count (N) / Average
Age
54 years
(18 – 84 years)
Gender
Female
98.8% (2185)
Male
0.2% (5)
Cultural Background
Anglo Australian
89.1% (1910)
European
8.8% (188)
Aboriginal/Torres Strait Islander
0.3% (8)
Asian
1.5% (32)
Middle Eastern
0.1% (4)
African
0.1% (2)
Geographical location
Metropolitan
54.4% (1191)
Regional
27.5% (601)
Rural
16.7% (365)
Remote
1.5% (32)
State/Territory
Australian Capital Territory (ACT)
2.7% (58)
New South Wales
26.5% (580)
Northern Territory
0.7% (16)
South Australia
8.8% (192)
Tasmania
3.2% (69)
Queensland
21.8% (478)
Victoria
25.4% (555)
Western Australia
11.0% (240)
Table 1: General profile of participants
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Relationship profile of participants
The relationship profile of participants is outlined in table 2 below.
Characteristic
Count (N) / Average
Relationship status
Partnered – Living together
80.1% (1747)
Partnered – Not living together
5.2% (113)
Not in a relationship
14.7% (321)
Period of time
Partnered - length of relationship
24.5 years
(2 months – 59 years)
Not partnered - time since last relationship
7.2 years
(2 months – 49 years)
Gender of Partner
Male
98.0% (1994)
Female
2.0% (41)
Children
Yes
84.2% (1830)
No
15.8% (343)
Relationship end since onset of breast cancer
Yes
7.4% (158)
No
92.6% (1970)
Current sexual relationship
Yes
77.2% (1662)
No
22.8% (491)
Table 2: Relationship profile of participants
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Breast cancer and treatment profile
The breast cancer and treatment status profile for participants is presented in table 3 below.
Characteristic
Count (N) / Average
Diagnosis
Years since first diagnosis
4 years
(< 1 year – 32 years)
Stage at diagnosis
Early breast cancer
74.6% (1602)
Locally advanced breast cancer
19.9% (428)
Secondary breast cancer (spread to other parts)
4.2% (91)
Don‟t know / unsure
1.3% (27)
Current treatment status
Completed treatment
45.6% (974)
Currently receiving treatment
45.5% (971)
Between rounds of treatment
1.2% (26)
Subsequent diagnosis of breast cancer
6.8% (145)
Subsequent diagnosis of a different cancer
0.8% (18)
Menopausal status
Post-menopausal
77.8% (1697)
Peri-menopausal
13.4% (292)
Pre-menopausal
8.8% (192)
Table 3: Breast cancer and treatment profile
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The Impact of Breast Cancer on Sexual Wellbeing
1956 participants reported changes in sexual wellbeing, described as decreases in: feeling
desirable (73%, 1385), intimacy (60%, 1090), frequency of sex (78%, 1427), sexual arousal (74%,
1344), sexual pleasure (64%, 1151), satisfaction with sex (62%, 1096), energy for sex (76%, 1379),
and interest in sex (71%, 1308).
I feel as if an integral part of my life is no longer well within my reach.
Although I am getting older and therefore might be expected to lose interest
in sex to a certain degree, sex has been an important component of my life
until I started receiving treatment for breast cancer. I worry about my loss of
interest in sex and I miss the sexual aspect of my life (65 year old woman,
early breast cancer, diagnosed 2008)
Very upsetting. I love my husband very much and our relationship is very
good. My physical body does not arouse or respond like it used to (51 year
old woman, early breast cancer, diagnosed 2008)
1259 participants provided further information about the impact of these changes. The most
common responses were emotional consequences (38%, 439), physical changes (22%, 249),
changes to self and femininity (19%, 212), and reconciliation of self to changes (11%, 123).
It’s very upsetting but I have no interest in sex at all, couldn’t care if I never
have sex again!!! (49 year old woman, early breast cancer diagnosed 2009)
Main problem is lack of interest and vaginal dryness. Husband VERY
supportive but doesn't initiate sex as often because he doesn't want to be
pushy as he knows I just can't be bothered a lot of the time (50 year old
women, early breast cancer, diagnosed 2008).
Sex is the last thing on your mind when your chest hurts, you lose all your
hair, you are tired and feel very unattractive - you just want to survive and
get through (35 year old woman, secondary breast cancer, diagnosed
2009).
When does breast cancer first impact upon sexual wellbeing?
Of 1728 participants who responded, the majority (52.7%, 911) said at the point of treatment;
27.3% (472) said it was at diagnosis; 20% (345) said it was after treatment had finished.
How important is sex for people with breast cancer?
91.5% (1848) reported that sex had been a very or somewhat important part of their life before
breast cancer, compared to 63.3% (1281) identifying sex as important in their lives now. The
proportion of participants who report that sex was not an important part of their lives increased
from 8.4% to 36.7% after the onset of breast cancer.
Which aspects of breast cancer or breast cancer treatment affect sexual wellbeing?
Of 1954 participants, the most frequently reported causative factors were: tiredness (71% n=1387),
vaginal dryness (63%, 1237), hot flushes (51%, 1000), feeling unattractive (51%, 993), weight gain
(49%, 953), difficulty being aroused (46%, 894), feeling uncomfortable exposing my body (44%,
n=860), medication side effects (39%, 762), loss of confidence in myself (38%, 751),
depression/anxiety (38%, 738), difficulty reaching orgasm (36%, 701), loss of sensation (36%, 700),
reduced nipple sensation (35%, 692), pain during intercourse (33%, 653).
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Conclusion
These findings support and extend previous research that reports significant changes in sexual
wellbeing after diagnosis and treatment for breast cancer, which can take place at the point of
diagnosis, treatment, or after treatment has been completed. This is an important issue for
individuals with breast cancer, described by many as the most difficult aspect of their breast cancer
experience (see also Thomas-MacLean, 2005; Bertero & Wilmoth, 2007).
These findings also confirm the conclusion that there are multiple factors associated with changes
to sexual wellbeing after breast cancer, including the tangible effects of cancer and cancer
treatment; physical changes in the body; emotional changes; and relational factors. A unidimensional approach which only focuses on one aspect of experience is therefore inappropriate
and a multi-factorial approach is needed.
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Impact of Breast Cancer on Sexual Relationships
The majority of 1999 respondents reported that breast cancer had affected their sexual relationship,
with 24% (469), saying it was affected “dramatically”, 26% (n= 520) “considerably”, 32% (647),
“somewhat” and only 15% (294), “not at all”.
The effect of cancer treatment has been devastating to our sexual
relationship, to my self-esteem and to my partner's sexual self-esteem (53
year old woman, early breast cancer, diagnosed 2008).
It is very frustrating for my partner, my interest in sex has declined,
therefore creating tension in the marriage (42 year old woman, early breast
cancer, diagnosed 2003).
I broke up with my husband of over 10 years at the same time as diagnosis.
I had to emerge from treatment alone and single and felt old, undesirable
and unsupported in this area. Must be even worse for younger women who
have not had many relationships at all. (45 year old woman, secondary
breast cancer, diagnosed 2007).
The majority reported relationship difficulty or breakdown, which was attributed to the participant‟s
disinterest in sex; partner rejection or absence of support; partner fear or inability to cope; partner‟s
taking on the role of carer; or existing relationship difficulties.
The feelings of exhaustion and pain have meant a whole change in my
relationship - my partner is now my carer - and I think it is this fact which
has altered our sexual relationship. I feel guilty about being a burden to my
partner and even though I want more intimacy I am then too tired to really
follow through. (57 year old woman, locally advanced breast cancer,
diagnosed 1987).
I went from a high libido to no libido or interest at all; my husband replaced
me in less than 2 months. For me there is simply no point in looking for
information as I really no longer care if it returns or not because I now also
have to deal with trust issues. I just don't see myself being that gullible
again. (52 year old woman, locally advanced breast cancer, diagnosed
2010).
I went into shut down mode where I only had emotional energy for myself.
Therefore I found it hard to have energy for mustering an interest in sex.
This in turn caused my husband to become frustrated and impatient. This
made it worse because I felt pressure, but anger because I didn't think I
should feel pressure given the circumstances! (42 year old woman, early
breast cancer, diagnosed 2010).
A smaller proportion reported relationship improvement, manifested as feeling closer or
experiencing greater intimacy with their partner since the diagnosis of breast cancer. This was
attributed to breast cancer offering an opportunity to renegotiate intimacy; better communication
since diagnosis; the fact of having a secure relationship before breast cancer; or the development
of a new relationship since breast cancer.
We stopped taking our sex life for granted and made an effort to maintain
intimacy and our sex life, even when it was difficult at times. (58 year old
woman, early breast cancer, diagnosed 2009).
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I feel my love for my partner is even stronger if that is possible and I know
he feels the same (38 year old woman, early breast cancer, diagnosed
2009).
Impact of breast cancer or changes to sexual wellbeing on partner
1348 participants reported that their partner had experienced negative consequences as a result of
their breast cancer, including fear of hurting her during sex (52%, 708), lack of interest in sex (37%,
498), difficulties in communication (34%, 459), tiredness (28%, 375), and change in role (seeing
me as a patient) (20%, 269).
He just looks at my problems as one of those things that just happens and
we just have to learn how to deal with it. (51 year old women, early breast
cancer, diagnosed 2008)
Impact of breast cancer upon single women and new relationships
413 participants described the impact of cancer upon their ability to enter into a new relationship,
with 57% (236) indicating that changes to their sexual wellbeing since the onset of cancer had
affected their ability to enter into a new relationship.
Very disappointing, I feel like a different person. I have no desire to get
involved again whereas I really enjoyed the thrill of the chase before (66
year old woman, early breast cancer, diagnosed 2006).
I feel less confident and avoid relationships (40 year old woman, locally
advanced breast cancer, diagnosed 2003).
The most frequently identified issues were related to feelings around appearance and the
perceptions of others with „body image/attractiveness concerns‟ noted by 77% (196); „lack of
confidence‟ (66.5%, 169); „not feeling desirable‟ (65%, 165); and „fear of rejection‟ (46.5%, 118).
The most common physical effects reported were „fatigue‟ (46.5%, 118), „vaginal dryness‟ (42.9%,
109) and „‟upper body or other pain‟ (22.8%, 58).
My husband died after months of lung cancer and 1 month prior to my 2nd
breast cancer. I do not have the confidence to form another relationship as
I have had a bilateral TRAM FLAP reconstruction and am scared of
rejection (woman (age not supplied), locally advanced breast cancer,
diagnosed 1995).
My libido is non-existent and I fear a relationship because I think that they
will get sick of my lack of desire for sex and look elsewhere or end the
relationship. I think that is why I'm afraid of having a relationship (45 year
old woman, secondary breast cancer, diagnosed 2004).
As I'm not in a relationship, I feel a need for intimacy on an emotional level
but would be concerned that this would come with an expectation for sexual
intimacy so have avoided getting into a relationship to meet my emotional
needs to avoid having to deal with sexual issues (45 year old woman, early
breast cancer, diagnosed 2005).
Conclusion
These accounts of relationship change after breast cancer confirm previous research reports that
the diagnosis of cancer can change the relational dynamics between people with cancer and their
family members, in particular their life partners, which can have an impact on their ability to cope.
Equally, whilst the experiences of partners are often neglected in research on sexuality and
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intimacy post-cancer, there is growing acknowledgement of their unmet needs in this area.
Reported disruptions include decreases in their own sex drive; fear of initiating sex with their
partner; difficulty regaining a level of „normality‟ within the sexual relationship; and feeling
unwanted and unattractive because of cessation of sex. Many of these findings have been
confirmed and extended by the findings of the present study.
There is also a growing literature examining psychological distress in partners, who have been
found to exhibit depression and anxiety, sleep problems and fatigue, and appetite disturbance. The
reporting of high rates of depression or anxiety, anger, guilt, and fear, as well as tiredness, in the
present study, confirms these findings.
Finally, the accounts of women who are not in a relationship highlights the importance of sexual
wellbeing for women who are currently single, and the need for single women to receive support, if
they ask for it, to alleviate fears or concerns about entering a new relationship. Sexual wellbeing is
not only a relational issue; changes in sexual wellbeing, and in sexual desire and arousal, can also
have an impact on those who are not in a relationship.
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May 2011
Fertility and Breast Cancer
24.7 % (452) of the 1830 participants who answered the question „has breast cancer had an effect
on your fertility?‟ reported that it had, had an effect, with 53.9% (987) reporting that it had not, and
24.4% (391) reporting that they did not know. Many women reported that they had not been
informed about infertility prior to treatment, and did not know about interventions to preserve
fertility.
My dream to have children was NEVER discussed, I was placed into early
menopause and suffer side-effects from that, recent tests show I have
hardly any eggs and will probably never have my own child (44 year old
woman, early stage breast cancer, diagnosed in 2007).
Can't have children because they had to bring on menopause. Very angry.
(45 year old woman, secondary breast cancer diagnosed in 2004).
The causes of infertility post-cancer were attributed to: Chemotherapy (213); Oophorectomy (41),
Menopause, (34). The majority of women described infertility as a devastating experience;
however, for some older women, and those who had finished having children, menopause was
welcomed.
This is a very, very, important issue as breast cancer survivors are
constantly reminded of their fight with the cancer in their daily life due to the
impact it has on the sexual relationship with your partner. The cancer
changes everything anyway but this impact lasts the longest and is a
constant in the relationship and is a very important part of trying to return to
a "normal" life after treatment and the disappointments that infertility as a
result of the cancer has left in the relationship. (49 year old woman, early
breast cancer, diagnosed 1996).
I was oestrogen positive so I can’t have any more children which I
desperately wanted, it’s too much risk, also my ovaries stopped producing
eggs on my 4th round of chemotherapy (39 year old woman, locally
advanced breast cancer, diagnosed in 2010).
Conclusion
These findings support and extend previous research which reports that fertility is a matter of major
concern for people with cancer. Indeed, since 2006, psychosocial guidelines for the care of people
with cancer include recognition of the need for support in relation to fertility post-cancer (Lee et al.,
2006), as a central objective. However, current guidelines do not provide practical strategies for
the application of such support in clinical practice, and fertility is still rarely addressed by health
professionals (Quinn et al, 2009; King et al, 2008; Crawshaw et al, 2008).
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Pathways to Addressing the Impact of Sexuality and Breast Cancer
Speaking about changes to sexual wellbeing or sexual relationships
1999 participants responded to the question “since the onset of your breast cancer, have you
spoken to anyone about changes to your sexual wellbeing or sexual relationships?” 65% (1292)
said “no”, and 35% (704) said “yes”.
I tried talking to a counsellor straight after the surgery but they didn't know
what to say (59 year old woman, early breast cancer, diagnosed 2000)
The person most commonly spoken to was: partner/husband (n=515), with 48% reporting being
satisfied with the discussion; GP (332), 38% satisfied; friend/relative (32), 48% satisfied; oncologist
(265), 33% satisfied; breast care nurse (139), 60% satisfied; psychologist (123), 52% satisfied;
counsellor (83), 44% satisfied; support group (75), 63% satisfied.
There is a doctor and nurse in the room at the time of consultations and l
never felt comfortable opening up in front of two people, plus they never
asked. It looked as though l was coping very well so l suppose they never
thought to ask either. (50 year old woman, locally advanced breast cancer,
diagnosed 2010).
Talking about sexual wellbeing to partners
Of 1902 participants, a greater number said that they never talk to their partner about sexual
wellbeing or intimacy since the diagnosis of breast cancer (19%, 343), compared to those who said
they never talked to their partner before breast cancer (9%, 173). There was no difference
between the number of participants who talk to their partner sometimes before breast cancer (65%,
1233) compared to after breast cancer (63%, 1121). However, a fewer number of participants
reported always talking to their partner after breast cancer (17%, 311), than before breast cancer
(26%, 496).
Reasons for not speaking to anyone about changes to sexual wellbeing
1323 participants described why they had chosen not to speak to anyone about the changes to
their sexual wellbeing. The most common responses were: I talk to my partner 38% (503);
embarrassment 36% (473); I can cope on my own, 32% (428); I don‟t know how anyone can help
32% (420); sex is a private matter 23% (303); the changes are not significant 20% (268); and I
don‟t know who to talk to 19% (263).
Because I am not in a relationship I would find it hard to discuss my
feelings of sexuality, or lack thereof (67 year old woman, early breast
cancer, diagnosed 2009)
My medical oncologist did ask me about sexuality and I did say, “Ooh it’s a
little bit sore at the moment.” Um, and I was very embarrassed because he
was a male and he was embarrassed. So we were both kind of a little bit
embarrassed about it like, I felt like he wasn’t really comfortable. Um, he
suggested that I see the breast care nurse, um, and she was really good
and you know, she made a joke of it and gave me some Sylk and a goodie
bag, she said, “I’ve got a goodie bag for you, you take that home and you’ll
be fine.” Then she rang me up to see if that was fine, I said, “No it didn’t
work.” And she goes, “Oh damn.” Anyway - - - (age and diagnosis details
not available)
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180 participants provided more information about why they did not discuss sexual wellbeing in
response to an open-ended question. The responses were: Sex is not a priority (22%, 40); Waiting
until after treatment to see if things improve (19%, 34); Not in a relationship (17%; 31); Health
Professional difficulties (9% 15); Age issues (7%, 13); I‟m a health care provider myself (3); Rural
issues (2).
The word sex hasn’t come up once in the whole of my treatment, not with gynaecologists,
not with oncologists or radiotherapists or nurses, nothing, no word. Doesn’t even – it’s
almost as if we’re talking breast cancer, we’re not talking sex, you know. It’s not come up
once in my experience. (Age and diagnosis details not available)
Who would individuals with breast cancer like to speak with about changes to
sexual wellbeing or sexual relationships?
1325 reported on who they would like to speak to about changes to sexual wellbeing or their
sexual relationship. The most common responses were: partner/husband (69%, 907); GP (26%,
346); breast care nurse (22% 300); counsellor (20% 267); psychologist (18%, 249); oncologist
(17%, 231); sex therapist (16%, 217). These findings suggest that couple communication is the
most desired form of communication, desired by nearly two thirds of the sample, with less than a
quarter wanting to discuss sexual wellbeing with a health professional.
Do women want information about changes to sexual wellbeing after breast cancer?
Of the 1901 who responded to the question “would you like to receive information about breast
cancer and sexual wellbeing?”, two thirds of the sample (68%, 1287), said yes.
Has information been obtained about breast cancer and sexual wellbeing?
Of 1907 participants who responded to the question, “have you obtained information about breast
cancer and sexual wellbeing?” over half of the sample (59%, 1117), said no. This suggests that a
substantial proportion of individuals desire to have information, but have not been able to access it.
Of those who said that they had obtained information, 791 provided details about the type of
information that was obtained, and satisfaction with this information. The most common reports
were information about: effects of cancer treatments on sexual wellbeing (470, 53% satisfied);
changes to my body (447; 57% satisfied); breast reconstruction (363; 61% satisfied); body image
and appearance (303; 51%); sexual functioning (273; 50% satisfied); information about partners
(204; 47% satisfied); where to go for support (164; 54% satisfied).
What type of information about breast cancer and sexual wellbeing is wanted?
1350 participants gave information about the type of information they would like to receive about
breast cancer and sexual wellbeing. The following were rated as very important by a substantial
number of participants: vaginal dryness (680); Relationship changes (597); difficulties in being
aroused (549); hot flushes (529); information for partners (524); loss of sensation (520); pain
during intercourse (498); body image and appearance (469); depression/anxiety (436); how to talk
about sexuality and intimacy (411); anxiety about sex (386); relationship communication (377); loss
of identity (344); sexual wellbeing across stages of cancer (311); breast reconstruction (308);
lymphoedema (269); sex aids and products (123).
Of 1456 respondents, the majority wanted to receive information through: booklet/leaflets (62%;
905); newsletters (60%, 865); or websites (57%; 821). A minority of participants wanted to receive
information through group information sessions (18%; 261), or telephone help-lines (10%, 141).
66 respondents provided information about other forms of receiving information. The main
responses were: email (n18); one to one session with a professional (n17); support group (n8).
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Difficulties in accessing information about breast cancer and sexual wellbeing
1632 participants responded to the question “have you experienced difficulty in sourcing
information about the effects of breast cancer on sexual wellbeing? 74% (1210) said “no”; 26%
(422) said “yes”.
Further information about difficulties in sourcing information was provided by 363 participants. The
main responses were: I have not tried to look for information (121); Information does not meet my
needs (116); I do not know where to look (92); Health professionals reluctant to discuss sexual
issues (28).
It is quite difficult to talk about sex even to a health professional and
sometimes the information were given at great speed and it's overwhelming
at times since I have to overcome the embarrassment first, then I can't
receive the information, advice and where to go for support as I would like
to have. Don't know where to go for support - to talk about it is a major
obstacle for me. (38 year old woman, early breast cancer, diagnosed
2008).
Acknowledging the needs of marginalised women
A number of women gave accounts of feeling that their needs and concerns were marginalised,
and their sexuality ignored, because they were seen as too young, too old, were in a same sex
relationship, or because they were not in a relationship.
Whenever I seek information about my sexual wellbeing (or lack of it), the
issue of my age bracket gets 'in the way'. Evidently, I am not supposed to
have an active and satisfying sex life at my age anyway. However, I don't
believe this to be correct, and I was enjoying sex, got relatively easily
aroused and would often masturbate right up to early 2008. I was 61 then
and don't believe that I was effectively much younger or very different from
the individual I am now. But the breast cancer has happened in the
meantime, and I believe it is the cause of my changed response to sex. I
would very much like to resolve the problem(s) in regard to my sexual
wellbeing, as I firmly believe I should be able to continue to enjoy sex till the
day I die. I miss it now. (Age and diagnosis details not available)
What has been tried to deal with changes to sexual wellbeing or sexual
relationships
1598 participants provided information on what they had tried to deal with changes to their sexual
wellbeing after the onset of breast cancer. The most common responses were: talking to partner
husband (61%, 969); lubricant (57%, 915), exercise (45%, 716), reading information
booklets/leaflets (31%, 500), talking to a health professional (26%, 411), anti-depressants (20%;
316), psychotherapy/counselling (16%, 260), sex aids (14%, 220), medications (11%, 180), books
(11%, 169). All other responses were reported by less than 10% of the sample. Many respondents
tried more than one means of dealing with changes to sexual wellbeing.
I did fill in a questionnaire at hospital regarding what counselling I felt I
needed but never heard any more from them. Since I did get help with
physio and lymphoedema etc. it did make me feel that I shouldn't be
pushing that issue. (52 year old woman, locally advanced breast cancer,
diagnosed 2009).
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May 2011
I tried to get some counselling through the hospital but they were not
interested, at times I have felt extremely desperate, after the diagnosis my
partner and I achieved a new closeness but he ruled out sex. I now
masturbate regularly, and have considered purchasing a vibrator but find it
a bit confronting. Have also considered reconstruction but realised it would
not be good enough as far as my husband is concerned, for him sexually I
will always be damaged goods. I have considered separating but over time
we have reached an accommodation where we have a fond but non sexual
relationship. (58 year old woman, early breast cancer, diagnosed 2003).
Conclusion
In previous research conducted in Australia by members of the current project team, successful renegotiation of intimacy post-cancer was associated with good couple communication and positive
relationship context (Hawkins et al., 2009, Gilbert et al., 2009). This suggests that the most
common coping response in the present study, “talking to partner/husband”, is an important and
appropriate strategy.
The finding that only 25% of participants in the present study had discussed sexual wellbeing with
a health professional, despite the high levels of distress reported, is a matter of concern. This
appears to confirm previous findings that few health professionals engage in discussions of sexual
wellbeing with people with cancer, even in areas where it might be expected, such as breast
cancer. There are a range of reasons for not speaking about sexual wellbeing after breast cancer,
which suggests that health professionals should respect the choice of individuals to not discuss
sexual wellbeing, and at the same time, be aware that individuals with breast cancer may be too
embarrassed to raise the issue, or not know what help is available.
Whilst the majority of the respondents wanted to receive information about sexual wellbeing, nearly
two thirds had not actually received any. This suggests that information needs are not being met. A
range of information is required, on topics ranging from physical, to psychological, to relational
issues, which the majority of participants prefer to access through reading material.
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May 2011
Part Two: Sexual Wellbeing and Breast Cancer: Health Professionals
Perspectives
This section of the executive summary outlines the results of a survey completed by 159 health
professionals, supplemented by interview accounts of a further 11 health professionals. The
sample comprised health professionals across a range of professions and geographical locations.
The majority of the sample (84.4%, 114) were primary health professionals, with breast care
nurses comprising the largest proportion (55.2%, 88), and health professionals working in allied
health making up 15.5% (21) of the sample.
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May 2011
Sexual Wellbeing in the Management of Breast Cancer
Do health professionals consider sexual wellbeing to be an important issue for
women with breast cancer?
Of 145 health professionals, the majority reported that sexual wellbeing is a „very important‟ (89%)
issue. Nursing (90.2%) and allied health professionals (94.4%) were more likely to endorse the
view that the issue of sexual wellbeing was “very important” when compared to doctors (57.1%).
Which aspects of sexual wellbeing do health professionals consider are important
for women with breast cancer?
Of 144 health professionals, „body image and physical attractiveness‟ was endorsed by the
majority (98.6%, 142) as the most important change to sexual wellbeing after breast cancer.
Physical changes, menopausal symptoms, relationship issues, and sexual desire/changes in libido
were also endorsed by over 90% of the health professionals.
Do health professionals currently raise the issue of sexual wellbeing as part of their
consultations with women?
Only 33.8% (49) of 145 health professionals reported that they „always‟ address the issue of sexual
wellbeing with women with breast cancer. The majority (57.9%) reported that they „sometimes‟
addressed this issue, and 8.3% „rarely‟ address this issue with women.
When do health professionals raise the issue of sexual wellbeing?
Of 142 health professionals, the majority (58.5%, 83) reported that it was „part of my standard
practice‟, 57.7% reported that the „woman or her partner raises the issue‟, and 51.4% reported that
they are prompted to raise the issue because they „identify it as a particular concern for the woman
or her partner‟. Doctors were more likely to address sexual wellbeing when it is raised by the
woman or her partner (85.7%), and were less likely raise the issue as part of their standard
practice (28.6%). In contrast, nursing (61%) and allied health professionals (55.6%) indicated that
they raise the issue of sexual wellbeing as part of their standard practice.
I think when they come to see a medical oncologist; they talk to them about
the possibilities of chemotherapy or hormone therapy. I think, once they’ve
had that consult, it’s a good time to for the Breast Care Nurse to try and
meet with them, and then just gently explain what your role is and perhaps
put that aspect out there to think about. I mean, of course, it’s different for
every woman, because if you’ve got a very young lady who’s newly
diagnosed and is going to be treated quite aggressively, then, ah, fertility
and sexuality are very much at – at the forefront. Because if she’s planning
– hasn’t had a family and is planning on having one, then you need to talk
to her about, you know, fertility and perhaps going to see somebody about,
banking eggs and – and freezing them and things like that. So, that
becomes a question upfront straight away. But if you’re looking after an
older woman, yeah, you just need to probably raise it and then say that
things may be different but there are things that you can do.
I think a good time to follow-up with it, - you know, addressing sexual
wellbeing issues, is actually when they go onto actual treatment - like, if
they’re having chemotherapy and stuff like that (Breast Care Nurse/Cancer
Care Co-ordinator, 6-10 years experience in cancer field, rural area)
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May 2011
Post mastectomy or surgery. If they’ve had a mastectomy I think it needs to
be bought up, sort of, fairly quickly. Um, and if not, just in the first, sort of,
months or so, I think. You know, when they’re just having general chemo or
radiotherapy (Oncology Nurse, 3-4 years’ experience in cancer field, rural
area).
How do health professionals raise the issue of sexuality and what approaches are
used?
The majority (74.5%, 102) of 137 health professionals reported that they „mention sexual wellbeing
as part of a general discussion of breast cancer and breast cancer treatments‟. 51.1% raise the
issue by „offering women written information on sexual wellbeing and breast cancer‟, 43.1% „raise
the issue indirectly by asking about physical health concerns‟, and 40.1% of health professionals
„directly ask women whether they have any concerns about sexual wellbeing‟. Doctors were more
likely than other health professionals to raise sexual wellbeing indirectly by asking about physical
health concerns (85.7%) compared to nursing staff (38.5%) and allied health professionals (44.4%).
Only 22.6% reported engaging „in a full discussion of sexual concerns and suggest strategies to
help‟.
I try to make a bit of humour out it, and I often say look um - they ask breast
care nurses to talk about sexuality um - following breast cancer; and then I
try to make them laugh, and I say, “Look, I’m not a sex expert, ask my
husband.” Which usually gives them a laugh and it kind of relaxes it a bit
(Breast Care Nurse, 3-5 years’ experience in cancer field, metropolitan
area).
It’s just the more you talk about it the more you normalise it. You normalise
it that it’s just another part of life and it’s another part of your body. It’s like
your range of movement for your arm, that’s an important part of your life
and these intimacy areas are important as well. So it’s normalising it I think
(Lymphoedema practitioner, 5 years’ experience in cancer field,
metropolitan area).
With any conversation about sexuality, but particularly when people are
really vulnerable after they’ve had chemo or radiotherapy for breast cancer,
and their body image is so hugely changed after they’ve had breast cancer,
so having that conversation about what is normal and how that can shift
when you have surgery, and coming into that space of self-acceptance is
really important, too (Women’s Health Nurse, 16 years’ experience in
cancer field, rural area).
What aspects of sexual wellbeing do health professionals convey to women with
breast cancer?
Of 108 respondents, the two aspects of sexual wellbeing that health professionals were most likely
to address were „Physical changes‟ (87%) and „Body image and physical attractiveness‟ (87%).
The second and third most common aspects to be addressed included „Menopausal symptoms‟
(84.1%) and „Relationship issues‟ (74.6%). Allied health professionals were most likely to address
relationship issues (88.9%) and body image and physical attractiveness issues (83.3%). Nursing
professionals most commonly addressed menopausal symptoms (91.7%), body image and
physical attractiveness (89.6%), and physical changes (e.g. vaginal dryness, lymphoedema,
vaginal discharge) (88.5%). Doctors most commonly addressed physical changes (100%), and
menopausal symptoms (100%). No differences were found between health professionals
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May 2011
according to region or sector. „Discussion of sex aids to assist with sexual functioning‟ (15.9%)
was the aspect of sexual wellbeing that was least likely to be addressed.
If a woman has had a mastectomy, body image can be an issue so I
recommend pretty camisoles which can make them feel better about things
(Breast Care Nurse3-5 years’ experience in cancer field, metropolitan area).
But you know just think of the feelings that you had when you first met your
partner or that and the holding hands and intimacy doesn’t necessarily
mean intercourse. Intimacy can just be closeness, and so with these big
changes to your body, that - start with that closeness. It is very important
that you can start talking to people and partners again. Um, what I find
sometimes is that it’s sort of like the elephant in the room that the woman is
feeling like this and their partner is feeling like that and they don’t want to
talk because there is that fear that she feels that her partner will think her
body is so changed and unattractive. And yet the partner will think oh I’d
better not touch because I’m going to hurt her. So that’s one of the main
things I think that I find is important. Just that re-establishment of intimacy.
(Lymphoedema practitioner, 5 years’ experience in cancer field,
metropolitan area).
21 participants provided further information, as did the interviewees. In their discussion with
women, health professionals worked to normalise sexuality and changes to the body post-breast
cancer, provided women with information about alternative forms of intimacy, discussed practical
strategies and help with lubrication, and also informed women that they can „always come and talk‟.
What referral strategies and resources do health professionals draw upon and
provide to women with breast cancer?
Of 138 health professionals, the majority (80.4%) reported referring women to an „appropriate
professional‟; 67.4% provided women with a „booklet or information sheet‟; 4.3% reported providing
women with „audio-visual material‟.
The interview accounts revealed that not all health professionals felt they had adequate access to
a referral network. This was particularly the case for health professionals working in rural and
regional areas of Australia, who provided many accounts of not knowing where to refer women to,
or not having access to an appropriate professional within the area. Some of the health
professionals working in rural and regional areas also expressed concern about the costs women
with breast cancer may incur if they saw an appropriate professional, as well as the considerable
travel time and associated fatigue involved in getting to an appointment.
I have been working without a social worker for three months, you know, I
hope to get a new one in January. There’s certainly no sexual counselling
available in the area that I’m aware of and it - it would mean, you know,
trying to seek somebody out in [state], or something like this, but you know,
these people have already travelled huge amounts and they’re really kind
of, broke. I mean, it sounds like a bit of an excuse, but yeah, it’s not (Breast
Care Nurse/Cancer Care Co-ordinator, 6-10 years’ experience in cancer
field, rural area).
We live in a smaller community, not tiny, but I’m from one of the regional
sites originally. So, you know, certainly, if we have clients out there, it can
become quite difficult to talk about sexuality with people you’ve known, you
know, for 10 years, or you know the family or they know yours. So, I think
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May 2011
I’d be wary of that. And I mean we’re wary of that in general because, you
know, we certainly have clients who say, “Oh, look, I know that person, I
know that nurse” you know, perhaps me, or, you know, my colleague,
“would rather not see them because we know them so well.” So, I guess
that’s another barrier and that would be somewhat unique to our area
(Oncology Nurse, 1 -2 years’ experience in cancer field, rural area).
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May 2011
Assisting Health Professionals in Addressing Sexual Wellbeing for
People with Breast Cancer
Barriers to raising sexual wellbeing with women with breast cancer
Of 117 health professionals 52.1%, (61) reported that a „lack of privacy/inappropriate setting‟
accounted for why sexuality was not addressed. „Sensitivity to a woman‟s culture or religion‟ was
reported by 51.3%; 35.9% reported „time constraints and pressures‟; and 30.8% felt that „the
woman would be uncomfortable‟; 4.3% (5) reported that there are „more important things to
discuss‟; 0.9% (1) said „is not a medical concern‟; and 1.7% (2) reported „sex is a low priority for
the woman‟. The open ended survey responses and interview accounts revealed other barriers,
including a lack of perceived skills and training, and difficulty broaching the issue of sexual
wellbeing with older women who are assumed to be sexually inactive.
You know, there’s a room full of people, but two metres apart, or a metre
apart from each other - you know, you can’t really say, “Well, how is your
sex life going?” (Breast Care Nurse/Cancer Care Co-ordinator, 6-10 years’
experience in cancer field, metropolitan area).
An older woman (early 80's) was quite offended that I had brought up
sexuality issues and assertively stated that she was not interested and that
I was "silly" to think she would have concerns about sexuality given her
age!!” (Breast care nurse, 6-10 years’ experience in cancer field, rural area).
What do health professionals think is needed to assist them in raising sexual
wellbeing with women with breast cancer?
When health professionals were asked what would assist them in raising the issue of sexual
wellbeing with women with breast cancer, „a list of appropriate referral sources‟ (81.5%, 110) and
„fact sheets‟ (81.5%, 110) were most commonly identified, followed by „information booklets‟ (72%,
104), and „a sexual wellbeing consultation checklist‟ (61.5%, 83).
Would health professionals like further professional development or training on the
sexual wellbeing needs of women with breast cancer?
An overwhelming majority of health professional (87.1%, 122) reported that they would like further
professional development and training on the sexual wellbeing needs of women with breast cancer.
In addition, the majority of health professionals (67.7%, 84) would prefer to receive this training
and development via „written information and resources‟. The second two most common
preferences reported by health professionals for training were: „online self-directed
training/modules‟ (61.3%, 76); and „workshops‟ (61.3%, 76).
I suppose workshops with role playing - just to be able to talk about those
things out loud gets over, gets you over the being tongue tied. And also
listening to how other people handle those sorts of questions
(Lymphoedema practitioner, 5 years’ experience in cancer field,
metropolitan area).
I would love to be able to turn up to a two-day workshop and have
someone say to me, “Right. In these circumstances, this is exactly what
you say, and here are some fabulous free resources for you to utilise, and
here’s a number to call anytime you get stuck, and here’s some free
supervision, ongoing.” (Psychologist, 3 years’ experience in cancer field,
rural area).
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May 2011
Conclusion
The findings from the survey and the interviews reveal that the majority of health professionals
consider sexual wellbeing to be an important issue for women with breast cancer. However, less
than a third of health professionals reported „always‟ addressing thus issue with women, with most
health professionals only „sometimes‟ address sexual wellbeing with women. The finding that
overall 57.7% of health professionals in this sample are prompted to raise the issue after „the
woman or her partner raises the issue‟ may be problematic in the light of recent research which
has shown that people with cancer believe that the onus should be on health professionals to raise
this issue with them.
Some of the perceived barriers preventing health professionals from addressing sexual wellbeing
included: a lack of privacy in a clinical setting; a lack of time – especially during the first
consultation; difficulty negotiating cultural and religious sensitivities; a lack of perceived skills and
training; and difficulty broaching the issue with older women who are assumed to be sexually
inactive. On this last point, given that more than two in three (69%) breast cancers in women are
diagnosed in those aged 40 to 69 years, (Australian Institute of Health and Welfare & National
Breast and Ovarian Cancer Centre, 2009), it is important that health professionals address
sexuality for women irrespective of age, so that the majority of women with breast cancer are not
excluded from such discussions.
The most common aspects of sexual wellbeing that health professionals conveyed to women postcancer related to physical changes, and body image/physical attractiveness. However, in the
interviews many health professionals reported offering practical strategies to assist women with
lubrication, as well as conveying to women the idea that sexuality is a normal and important part of
a person‟s quality of life. In addition, many health professionals also provided detailed accounts
about having discussed alternative sexual practices with women and information about how to
redefine intimacy if penetrative sex was no longer possible or desirable. It is promising that many
of these health professionals are discussing a range of intimate and sexual practices that fall
outside the coital imperative. As research has shown, those who engage in alternative practices
report being as satisfied or more satisfied with their post-cancer sexual relationship (Gilbert et al.,
2010a).
Almost all of the health professionals reported that they would like further information and training
about sexual wellbeing in the context of cancer, and in particular, how to raise the issue of
sexuality with women. This finding is consistent with other research which shows there is a need
for health professionals to be skilled specifically in how to raise and discuss sexual issues with
patients (Woodhouse et al., 2008). This information and training would be best delivered via a
written resource, through engagement with an online learning resource or via a workshop providing
written resources.
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May 2011
Next steps for BCNA
BCNA will use the results of this research to identify strategies and to develop information and
resources for women with breast cancer, and the health professionals that assist them, to better
support women to effectively manage the impact of breast cancer on their sexual wellbeing.
Further updates will be provided through our website www.bcna.org.au and our quarterly Beacon
magazine.
For further information about this research contact Michelle Marven, Policy Manager, Breast
Cancer Network Australia on 1800 500 258, or by email [email protected]
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